On a hot and humid August afternoon in 1996, my husband and I heard the word Autism for the very first time. We had instinctively known something was different with our daughter Elizabeth almost 2 years earlier but we had been unable to find a professional anywhere in Kentucky to help us fully understand what the causes were behind the delays we were witnessing as well as the severe pain our child felt day in and day out.

It was easy enough to describe. At about fifteen months, she stopped talking. She also stopped smiling and caring about those of us around her. Elizabeth withdrew from our family, her siblings and our life as a family! Instead, she preferred to stand in the kitchen and open and close the doors of our cabinets, slamming them as hard as she could, over and over again. When she wasn’t slamming the cabinet doors, she was staring at the TV, only engaged by one video, which she watched over and over and over again.

She also cried, a lot. Sometimes she cried for four or five hours a day. She cried for hours before she fell asleep at night and as soon as she woke up from a nap. What was so heartbreaking was that she was inconsolable during these times! The crying would last for hours and hours until her body finally collapsed from exhaustion. I made countless appointments with her pediatrician leaving with no answers or worse, a dismissal of my concerns.

We were sitting at a table in an impossibly small room with ten physicians all dressed in white lab coats. As they spoke to us, they reviewed CT scans as well as the developmental history we had given them earlier of our daughter. They also presented us with a brief description of the observations they had made as our daughter walked around and explored the new toys in their exam room eight weeks earlier. As they spoke to us about the disorder, I strained to hear words of hope, words of action. Please, I kept thinking, please tell us what we can do to help our little girl!! But the message we received back was devastating. We weren’t advised to do anything different-not biomedical interventions, not intensive behavioral therapy - just speech once a week and occupational therapy twice a week. “Just love her”, they said.

Devastating stories like ours were very common in the mid 1990’s. As awareness and understanding about the disorder of Autism continues to improve, they will hopefully become a thing of the past, forever.

Our Past >